Journal
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
Volume 28, Issue 4, Pages 306-315Publisher
ELSEVIER SCIENCE INC
DOI: 10.1016/j.jpainsymman.2004.01.008
Keywords
death; quality of dying; outcome assessment; quality of health care; quality indicators; health care; end-of-life care; family; proxy; terminal care; attitude to death
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Improving end-of-life care requires accurate indicators of the quality of dying. The purpose of this study was to measure the agreement among family members who rate a loved one's dying experience. We administered the Quality of Dying and Death instrument to 94 family members of 38 patients who died in the intensive care unit. We measured a quality of dying score of 60 out of 100 points and found moderate agreement among family members as measured by an intraclass correlation coefficient (ICC) of 0.44. Variability on individual items ranged from an ICC of 0.15 to 1.0. Families demonstrated more agreement on frequencies of events (ICC 0.54) than, on determinations of quality (ICC 0.32). These findings reveal important variability among family raters and suggest that until the variability is understood, multiple raters may generate more comprehensive end-of-life data and may more accurately reflect the quality of dying and death.
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